Does Camzyos reduce thickening of the heart or manage symptoms?

Welcome to Mayo Clinic Connect @haasil.
There is a lot of information here at Connect about all things HOCM (Hypertrophic Obstructive Cardiomyopathy) and HCM (hypertrophic cardiomyopathy).
Have you had a chance to look around? I posted a couple of links from Connect about Hypertrophic Cardiomyopathy and the Camzyos support group. I also posted a link to Camzyos where you can go and learn about what this drug does and doesn't do.
You mention you were advised to take Camzyos, were you not given any information about it? I would certainly ask your cardiologist. This is something that you need to learn about to be your own best advocate. HCM and Camzyos is something your physician needs to be up to date and very well informed of. It is important your doctor knows how to treat your condition. Camzyos is a miracle drug for some, and for others they cannot tolerate it at all. Do your homework and read here on Connect and whatever else you can get your hands on!
How long ago were you diagnosed?
Were you diagnosed straight away, or did it take time to finally arrive at HOCM?
How is your overall health aside from HOCM?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
https://connect.mayoclinic.org/discussion/hcm-ers-introduce-yourself-or-just-say-hi/
https://www.camzyos.com/

Hello,
Thank you for responding to my question. I was diagnosed last year February after an echo for a murmur and was seen by a Camzyos cardiologist but because of some circumstances with paperwork I decided to see another cardiologist for a second opinion mostly due to the black box warning. I have once again been recommended to use Camzyos. I do get short of breath at times and a little tired but have no other symptoms and am not restricted in my movements or daily activities. I have researched as much as I can to try and determine if the pill reduces the thickening but cannot find any answer. My doctor said it could but nothing definite from him or online which is why I thought to try the support group. From what I can determine, it is basically for symptoms which I don't have a lot of and the only way to reduce the thickening is through Alcohol Ablasion or open heart surgery. I will continue to research and will make a decision soon about starting the program. Thank you again for your kind response

Hi. I started Camzyos last October after having HCOM for over 5 years. I recently became more symptomatic (65 y/o), having trouble climbing stairs without SOB at the same time my ECHO showed a significant increase in my gradient (over 100). I elected to start Camzyos and had an immediate decrease in my gradient to normal. HOWEVER, I did not feel much different. Since I had minimal side effects, I stayed on the medication. After 6 months my Cardiologist surprisingly stated he could barely hear my murmur anymore! We feel this is related to my mitral valve flap or septum decreasing in size. I am now trying to push myself to attempt more stairs and get my exercise tolerance back up to speed. Fingers crossed. I am grateful I persisted with staying on the medication and hope everyone would give it a year to assess benefits.

Hi @haasil and welcome to the family. I hope folks here can help answer your question. This support group has been an amazing support for me. I assume you probably found the video https://www.camzyos.com/resources#video1 but in case you haven't, I recommend it. But first, I am no expert - I'm just an idiot who watched a video. So take everything that follows with that in mind.... The way I understand it, Camzyos doesn't actually cause any structural changes to your heart (thinning out the the thickened muscle), but it also doesn't really just treat/mask the symptoms either. Rather, it affects how the compounds myosin and actin interact with each other to help your heart contract and relax better. So while the Camzyos is in your body, it helps the heart pump better DESPITE the thickened muscles. But if you go off Camzyos, (when the last traces are washed out of your body), things go back to the way they were - same thickened muscles as always, but back to the old impaired contract-relax cycle. Now that being said, I'm defining "symptoms" as "the things I feel." But if you define "symptoms" as "the things I feel AND the numbers that show up on an echocardiogram" (see the post from @andyherman3), then YES, Camzyos is working on the symptoms. But again, not just by masking them. Did that make sense? It made perfect sense in my head, and I hope it translated properly. For what it's worth, I was lucky enough to be eligible for Camzyos, and that it worked immediately and amazing well for me. 17 years of debilitating symptoms 100% gone in under 2 weeks. Whatever you elect to do, I wish you good fortune!

Hello @andyherman3
Thank you for sharing your story and congratulations on your positive response to taking the Camzyos medication. I appreciate knowing about your success with the medication and hopeful that, once I start the program, I too will have a positive outcome. Thank you.

Hi @boatsforlife and thank you for the nice family welcome. I have had great information in the responses to my questions from this support group and they are very much appreciated. I am so thankful for your information and you have helped me more than you know. I wasn't able to get any clear answers to the reduction of thickening from research online or my cardiologists so I also came to the conclusion that the Camzyos pill did not alter that but did do it's job to help the heart pump better, more efficiently, and get that blood to where it needed to be easier and relieve the symptoms. Your clear explanation made perfect, understandable sense and is a great help in making up my mind....thank you for helping me understand what, at times, the professionals couldn't. I also wish you continued good health and many, many days of smooth sailing ahead. Thanks again!

Hi@boatsforlife another thing that I have discovered from my cardiologist is that the blackbox warning that’s very scary and repeated often is there because they don’t want to test CAMZYOS, the way that the FDA wants them to test it. They are testing it in a different way and so the FDA is forcing them to put the black box warning there. I’m not sure exactly what the differences maybe somebody else who knows can chime in. It made me feel safer after I heard that because whenever I would start to go through the literature about it, I would be stopped by those boxes! I still am not on it. I’ve been a similar situation to you not too many symptoms, but sometimes pretty high gradient and some symptoms.

Thank you soooo much for the information about the black box warnings! This is a concern that I have had since being advised to take the Camzyos and could not get a good answer from my doctors about it. They just didn't have any information about any deaths on the pill and had no insight into why the warning was there. I always thought that to put a black box warning on a medication there had to have been at least 1 death connected. You have put my concerns in that matter at ease. I have not agreed to start the medication yet but am leaning in that direction after corresponding with the very knowledgeable people on this website. Thank you very much for your input....much appreciated!

I am new to this discussion. Can someone explain to me what is the Black Box.

Hello @gjs . The black boxes are the "oh my gosh" side effects warnings that all the TV advertisement warn about, while speaking so fast that you can't even understand what they are saying. I will try to attach a screen capture from the Camzyos product monograph, but if it doesn't show you can get the whole monograph at https://www.bms.com/assets/bms/ca/documents/productmonograph/CAMZYOS_EN_PM.pdf With every medication, especially new ones, there may be risks, and these are potentially serious things you need to be aware of.